Monday, July 27, 2015

my broken heart

In 36 hours Dr. Roderick MacArthur of the University of Alberta Hospital will be cutting into  - or cracking open - my chest.

I'm more than scared. I'm stunned, I'm overwhelmed, I have difficulty breathing when I think of it. My whole body seems to tremble from the inside.

But it has to be done.

This is my relapsing polychondritis story.

Polychondritis is rare. Attacks on the heart aren't unheard of, but they are rarer still.

When I experienced heart failure at the end of April - after 18 months or so of fatigue, dizziness, shortness of breath, muscle weakness, depression and more - and the leaking aortic valve was finally discovered, I heard every day from one doctor or nurse or another that I was a "mystery". Even at this nationally-renowned teaching hospital, none of them had ever seen this before.

Because I don't have heart disease, per se. In fact, the angiogram I had on July 17th showed perfectly clear arteries, which is fantastic.

I have relapsing polychondritis, an autoimmune disease that is most easily compared to rheumatoid arthritis ... except that I don't have swollen joints or daily pain.

Relapsing polychondritis attacks cartilage, usually in the ears and face. I had two episodes like that; the first was in 2011, the second in 2014. The pain was intense, but once I received steroid treatment it faded. I believe, however, that the second episode never really ended, even if the pain did. I believe it continued, targeting my heart, inflaming the aortic and mitral valves until they were unable to pump blood properly and I ended up at the U of A emergency room around 2 am on April 30, 2015.

And now, on July 29th, the aortic valve will be replaced with a mechanical one. But that won't be the end of the story, because it won't solve the polychondritis problem.

I started receiving a monthly infusion of Actemra on the 14th of July, but we won't know if it's going to help for a few months. The idea is to find something that brings the inflammation down. Actemra is a new drug and there is nothing in the medical literature to tell us how effective it will be for me, particularly considering it's a rheumatoid arthritis drug.

In the meantime, I will be taking 50mg of Prednisone for the indefinite future and I'll get some new heart bits installed.

I'll be back when I can.

Friday, July 24, 2015

javascript for n00bs

Challenge: CRAZY Face

Made using: Khan Academy Computer Science.

It's not a smiley face, but it's a start. I've completed five per cent of Khan Academy's free Intro to JS: Drawing and Animation course and I've learned to draw rectangles (squares), ellipses (circles), and lines. I can move them around and I can size them however I like. Hence, the appearance of CRAZY Face.

Next I learn to color. Right up my alley.

the low maintenance me

I used to want to be loved. There was a time when I craved it, in fact. Sometimes that craving would lead to desperate acts that embarrass me now when I think of them.
My partner of five years has never said he loves me, and I don't expect he ever will. I don't need him to say it, though I tell him almost every day I love him.
I stopped wanting 'romance' when the relationship before this one ended.
It was in 2003, and he was married. Our breakup hurt so much I came to wish I'd never met him. For years afterwards I would fantasize he'd change his mind and come find me, sweeping me back into the life I'd dreamed of with him.
I came to my senses eventually, and met Sean. After six years or so of singlehood, I was in a balanced place. I liked myself and was content. I still do and I still am.

I understand how this must sound. It's natural to suspect something must be wrong, to believe I'm missing something. I'm not saying my feelings won't change, but right now and for the last five years, I just haven't needed or wanted any of the verbal expressions of affection. I don't need or expect Sean to tell me what I mean to him. I know it from his actions, yes, but it's not something I even think about except in passing.

It's as though the cravings I used to endure finally flamed out, freeing me to accept what I have and what I receive.

This post was inspired by The True Secret of Writing: Connecting Life With Language, by Natalie Goldberg.

Thursday, July 23, 2015


Something fell into place as I was doing my fourth Zentangle today, and I feel excited.

I completed Day 3 of One Zentangle A Day: A 6-Week Course in Creative Drawing for Relaxation, Inspiration, and Fun, and learned the tangles Hollibaugh (the one that looks like thatch), Poke Root (it looks like cherries to me), and Festune (upper left corner, it reminds me of candy ... or blood platelets). I used Tipple (the bubbly one) to balance the dark areas of Hollibaugh; Static (the one below Festune) because even though I don't like it it was a perfect fit for that straight space; and I tossed in Knights Bridge (checkers) as a transition between the roundness of Festune and the black/white of Hollibough.

I'm terribly excited that it worked out so well. It's a helluva boost to my confidence.

Wednesday, July 22, 2015

lost, found, lost again

I really like this question from reddit:

If someone handed you a box with all the things you've ever lost, what would be inside?

My grandmother's engagement ring immediately jumps to mind. I lost it in a house where I was renting a room in 1995. I think I left it on the toilet tank while I showered, it got knocked off and fell into the toilet. Or I forgot it on the toilet tank and the landlady took it, but I don't think that's likely. I looked for it for weeks and never found it, that's all I know.

It was the second time I'd lost it, too. The first time, in 1992 or so, it disappeared from my father's home. I found it many months later in a retail space we'd rented for a software store my family was starting. It must have hitched a ride on some furniture we moved from the house to the store. I was pretty excited to find it that day and thought I'd be more careful in the future.

Not so much, apparently.

Monday, July 20, 2015

tipple, static, crescent moon

The Day 1 Zentangle
Beckah Krahula, author of One Zentangle A Day, writes:

There are no mistakes in Zentangle, so there is no need for an eraser.

I'll be taking her at her word.

My hand is shaky, perhaps from the medications, and my eyes don't focus properly, but I love what I've made today. It's such a scary thing to set something to paper - to make it permanent - but I'm so committed to this book that I'm willing to experience that fear.

I used a 3.5"x 3.5" tile from Artist's Tile Sketchbook; the Sakura Pigma Micron 025mm (01) black pen; and a Tombow 2H pencil and the Derwent blender for shading, .